A Case Study in Human Experimentation: The Patient as Subject, Object and Victim

Abstract

The case study has, in many respects, been replaced in post-World War II clinical trials by the investigation of cohorts. In medical reports and publications, the results of such studies are expressed through various statistical measures of survival, while stories of the individual patients almost never appear. While statistical measures of survival, which have been developed to a fine art, take centre stage in reporting the results of cancer clinical trials, complications are usually given towards the end of the paper, almost as an afterthought. And even here, the rate of complications is systematically underestimated favouring the physician’s perspective over that of the patient.¹ These clinical trial representations are a poor proxy for the suffering of the patients.² Even physicians participating in clinical trials forfeit a good part of the individual character of their work, since in most randomised trials, they are denied access to accounts of the accumulating results of the trial before it has ended. In addition, the ethical ground for enrolling a patient in a clinical trial (the so-called principle of equipoise) is that the physician finds no reason to favour one arm of the trial over another based on a cohort of patients rather than the individual patient under consideration.³ For problematic or notorious clinical trials (like the one we will recount below) the patient’s story must not only find its way out from under the statistics, graphs and tables of the researchers, but it must also compete with the agendas of an increasing number of other actors (family members, ethical critics) who enter the story.⁴